Few More Questions Now My Toddler Is Gluten Free...

[kellyanna-99]

I originally posted last week about my three year old daughter ([url="Open Original Shared Link) who is a new celiac patient.

She seems better already on the diet (It's been about a week). For the first time since the Sept she hasn't had the runs or the horridly-bad, foul smelling bowel movements. Not to go on, too much about the poop ,, but it really is just poop now! She is not complaining about a tummy ache anymore. SHe is still irritable, but that could be the three year old temperment. Although, I am hoping that improves soon too. How long before the gluten free diet takes full effect, any you see a difference.

The grocery store has a lot of gluten free products, and there is also a local bakery that does breads, bagels, cookies for medical diets (celiac, allergies, etc). She likes all of that. But, if it doesn't say "gluten free", I'm still a bit unsure. Is it a good idea to see a dietician? nutritionist? Or is there list of acceptable products out there? (one question I've had, is it in condomints, toothpaste, etc).

Is it worth it to join the celiac association? I contacted the canadian celic association for information, and they jsut sent me a membership application and a few pamphlets, very little information. Our local branch, isn't affilated with the national branch, I'd still like to find that out.

I'm still wondering about the diagnosis (our doctor diagnosed without the biospy, as he didn't want to send a toddler for it, with the chance for false readings, and if the diet trial works, why put her through that). So, is she a celiac? At some point, will they do a biopsy when she is older to confirm definitively? IF so, would she have to be on gluten products for a while agian? Is it worth it to push for the biopsy? my gut says probably not, since she is already better on the diet, but I wonder about the future. I see a lot of dicussion here and when I search online that leaves me confuse on the biopsy issue.

Is it true, you can claim the celiac foods on your taxes (we're in canada?) since they are a medical necessity?

Is it normal to have excemza with this? I've read about the dermatitis ? disease that goes along with celiac at times, and it isn't that I think, but she does have another rash. We go back in two weeks, soI'll ask then.

I think that's it for now.

[Ursa Major]

I am glad your daughter is starting to feel better. Is she still consuming dairy? That could be the cause of her remaining issues (as could soy and/or corn), as well as the eczema.

Many nutritionists and dieticians know precious little about a gluten-free diet, but some are helpful. If something doesn't say gluten-free, it doesn't necessarily mean it contains gluten. Just read the ingredients! If there is no wheat, rye, barley, natural flavours, or malt/maltodextrin in it, it is probably gluten-free. If in doubt, call the manufacturer to find out.

For a biopsy she would have to eat the equivalent of four slices of bread for at least three to six months of even having a slight chance at a positive diagnosis. Maybe more like a year! That would entail completely destroying her villi again and possibly making her deathly ill, not to mention maybe triggering other autoimmune diseases like diabetes. Not a good idea at all.

[Worriedtodeath]

How long before the gluten free diet takes full effect, any you see a difference.

we are into week 7 or 8 and have noticed that she is basically normal. Stools are regular though still soft, attitude is 100% improvement, grumpiness is gone, she looks better and is starting to fill in in the butt and arms.

For the moment we are trying to stick with veggies/fruit/meat and homemade stuff to give her a chance to heal as completley as possible before adding in more grains or such. I've recently started making bread, rolls, and pancakes but still have issues if she gets too many in a day. Soy also seems to cause minor issues and dairy is out completley.

I'm still wondering about the diagnosis (our doctor diagnosed without the biospy, as he didn't want to send a toddler for it, with the chance for false readings, and if the diet trial works, why put her through that). So, is she a celiac?

Kudos for your dr recoginizing that since mine couldn't wait to get in there. She is either Celiac or non celiac gluten intolerant - either way no gluten ever. The first has villi damage the second may not have any villi damage but still has the gi problems. either way treatment is the same

At some point, will they do a biopsy when she is older to confirm definitively? she will only get confirmation after being on gluten for a LONG time. And if she is NOn Celiac gluten intolerant, there won't be any damage regardless of how much gluten she eats. Just the misery. We are discovering that we may fall into that group and all of my kdis have really low ttg but respond in amazing ways to the diet.

Is it worth it to push for the biopsy? having put my child back on gluten to appease all the drs and get the biopsy, it is not worth it especially if they are not on gluten long enough to develop enough damage. You are talking about basically destroying villi of the small intestine before a dx can be made.

but I wonder about the future. the only thing I wonder is if she will stand firm before a dr who doesn't want to believe she reacts to gluten when she is out on her own. But I have read here drs who dismiss a positive biopsy so I'm not real sure a dx would be of any help. it won't take long for her to know she can't handle gluten and I doubt she will want to stay on a gluten diet especially after growing up without any gluten.

Is it normal to have excemza with this? Don't know if it is normal as in everyone has that but my oldest son has had horrible skin since he was 2 - looks like chicken skin and itches him- and it has disappeared except for the back of his arms and his thighs. He was covered in it.

Stacie

[gfgypsyqueen]

Both of my kids had excema of sorts. Neither respond to any of the medications they were prescribed. Turns out the oldest gets the excema from milk (she is now milk free). The youngest had terrible itchy rashes all over her legs, feet, and soemtimes torso. The combination of gluten-free/CF makes all of her rashes go away. Now she announces when the itchies come back. Haven't been able to pin it down to a gluten or dairy all the time, so she is off for allergy testign. (we have severe food allergies too)

The youngest is gluten-free. She took about a week to start having a normal controlable poop. Within a few weeks we had a normal child. The constant starvation was mostly gone, she slept through the night, the behavior was much better...months later she is consistently growing!! Her behavior, rashes, sleeplessness, and hunger issues come back when she has a reaction.

[Darn210]

I'm still wondering about the diagnosis (our doctor diagnosed without the biospy, as he didn't want to send a toddler for it, with the chance for false readings, and if the diet trial works, why put her through that). So, is she a celiac? At some point, will they do a biopsy when she is older to confirm definitively? IF so, would she have to be on gluten products for a while agian? Is it worth it to push for the biopsy? my gut says probably not, since she is already better on the diet, but I wonder about the future. I see a lot of dicussion here and when I search online that leaves me confuse on the biopsy issue.

If you've got a doctor that is willing to diagnose based on a trial diet, then you don't need the biopsy. It seems a lot of people do the biopsy because the doctor won't give the diagnosis without it. And without a doctor's diagnosis, then there may be issues with getting schools to conform with requirements or to claim any potential tax benefits. I'm not sure about Canada, but the US has a tax benefit for having to buy gluten-free food but you can only claim the cost difference and it has to meet a minimum cost level to claim. A lot of bookkeeping for a lot of people that probably wouldn't meet the minimum anyway. . . kind of a case by case scenario as to whether it would be worth it or not.